Defective.

Inadequate. Unloved. Hurt. Hopeless. Deficient. Incompetent. These are words that while you’re going through a rough patch in life you go back and think about.  You think about how this could happen to you and how much you wish things were different but they aren’t and you have to suck it up, put on your big girl pants and just deal with it.  Remember how my last post was speaking on my flare-up?  This week it got worse. Way worse than I expected it to get.

So of course it starts off with a minor cold. A minor flu. I knew I was sick but I thought it would go away on its own and then I would be fine.  Monday through Wednesday I was functioning normally.  Yes, I was sick and I noticed it started progressively getting worse but I thought nothing of it.  I was going to be fine and nothing was going to happen.  Wrong as usual.

I wake up Thursday morning to my mother slamming our front door leaving while I’m hunched over my bed on the verge of tears. I call my boss, letting her know I cannot go into work and then call my mother telling her I’m going to go to Urgent Care.  I start getting ready slowly as each part of my body aches in pain and I head out to urgent care.  I’m there for about two hours and they say I have an infection in my body and they prescribe me some kind of nonsense.  I say nonsense because those pills actually made me worse.  I went back home with my prescription, tons of pedialyte and a couple bottles of ensure because I did not feel like eating.  I got into bed, took those pills and then fell asleep.  I woke up about 2 hours later with sharp pains in my stomach that I only remember so well.  I began freaking out and praying that it wouldn’t last.  I was praying it was just a spasm that my body was having and I was going to be okay.  I decided to fall back asleep just to check but once I woke up again the pain was even stronger.  I called my primary doctor and he told me to go to the hospital ASAP.  I knew something had to be wrong because I was not having stomach pains prior to that medication and I looked it up.  The medicine clearly states do not take if you have a liver disease. I wanted to flip out because a doctor who clearly knew I had blood clots in my liver and I had complications of my liver, gave me a medication in which affects my liver.  I called my mother and my father and told them to hold off on the hospital because I knew it was the medication making me feel horrible.  I didn’t go to work on Friday either and I was on bed-rest minus the hour I went to my job doctor to get actual antibiotics.

The whole time this was going on, I was having emotional breakdowns which I haven’t had lately. All you do is think about how much pain you are in, how you wonder why this happened to you, why you are so defective and imperfect and how any one would ever be able to handle you.  These are the lows of having a disease.  Somedays you feel like giving up and Thursday was that day for me.  I felt like giving up, I hated this sickness and I just let it take over my body and I gave into it.  I wasn’t positive and I was incredibly rude to people who just wanted to help me feel better.   I gave into thinking I wasn’t enough nor would I ever be enough trailing around with this sickness.

It’s just the highs and the lows.

N. Rarity.

 

Flare-Up

Let’s discuss the term “flare-up.” The definition of a flare-up is a sudden outburst of something, especially violence or a medical condition and in this case, I believe we know which is mine. I often get flare-ups if I do not get enough sleep, if the weather changes drastically, if I continuously go out, if I take an airplane, or if I just breathe the wrong way. The worst part about it is that I could go to sleep one day perfectly fine and the next day I feel like my body has been run over with an 18 wheeler. It’s hard to function throughout the day while you’re going through a flare-up because honestly all you want to do is stay in bed and not move throughout the whole day.

Currently, I’m going through a really tough flare-up. If you look at the main picture, you would think I look fine and there is no chance that I could be sick! WRONG! I was in so much pain and felt so sick but I managed to get through it. I do not know how it started, it could be the fact that I have barely had a day to rest in my bed curled up into a cocoon, but this is a hard flare-up. Remember the spoonie theory I introduced a couple posts back? Well counting spoons is a no go because I wake up in the morning with zero spoons at all, which means I have zero energy and zero will to even get up out of bed. That is the worst thing about having a condition and/or a flare-up. You wake up in the morning with no motivation and even when you find a little tiny bit of it; it’s gone as fast as you found it. With me, I wake up around 6:30 am to feed my puppy, go back to sleep for about an hour or so, get ready for work to leave my house by 9 am, to work from 11-7 and to get back home at 8 pm. So basically, I am dragging myself throughout the day to be out of my comfort zone for about 9-10 hours and even when I get home I either go out to enjoy my life or just go right to bed because my body cannot handle the pressure. What I am going through now is constant back aches, migraines, weakness, throwing up, stuffy nose with constant nose bleeds, chills, looking like I haven’t slept since 2016 and the list goes on and on. This is one of the worst flare-ups I’ve had in a while and all I want to do is sleep when I cannot even do that as much as I want to because weekends are my only free time for me. While you’re reading this you are probably wondering why I don’t just take pain medication and call it a day. Well, I can’t, it’s not as easy for me as it could be for someone else. Tylenol does not work anymore due to the years of using it and I am not allowed to take any other medication at all which leaves me with the only choice: Deal with it. So while you sit there, just remember everyone who LOOKS healthy may not be and everyone is going through their own struggles that sometimes can’t be easily fixed.

Thanks for reading.

– N. Rarity

November 2016

Okay, okay, I know I’m a day late with this post… my apologies *shrugs* let’s continue on with the story shall we?

*Warning: Semi-Graphic image in this post, post-operation*

November 2016.

You’re probably wondering in your head… hmm seems pretty recent and the truth is, it was way too recent for my liking. As I said, every 1.5 years I go into the hospital and this is the 1.5 year from 2014.  I went to Florida in October with my parents as a little family vacation/friend-cation.  I got to see a lot of my closest friends and I was happy because in Florida, I am the happiest.  I barely slept and spent all my time with my friends taking advantage of every second there was.  So my last night in Florida, I stood out until about 3-4 a.m. knowing that my flight was at 12 pm and I had to be at the airport by at least 10 a.m.  With my condition, I need sleep, I need my body to rest and when it doesn’t then I go into a flare-up.  So I get back home, a little tired and drained but I relax the remainder of that day that I get home so I think I’m fine.  The next day I wake up to realize I feel horrible, and I mean flu-type horrible.  So for the next week or two I just let it sit there because I cannot take any OTC medication (which sucks because I have constant pain and migraines… HEEEELP.)  But for some reason, I ended up going to the doctor because after a while the flu began to turn into pain of some sort in my stomach so automatically that got me at attention to go get checked.  I went through blood-tests, sonograms and cat-scans to check my entire liver area and something seemed off to my primary doctor.  I ended up calling my liver doctor and the only thing I remember him saying to me was to head to the hospital immediately and get admitted.  Once again, that is probably the worst thing someone can tell you.  The good thing is I was processed within 4 hours in the Emergency Room to be admitted and I had a bed waiting for me.

The first day, I had doctors come visit me and asked me to explain what happened and how I was feeling. I went through a sonogram at the hospital to begin taking steps on what to do next.  The next two days, I found out from the doctor that one, the blood clots had closed up AGAIN and two, I was going in for a surgery called TIPS re-visitation.  What this means is that they were going back into my liver and redoing the entire surgery of opening the blood clots again.  Once I heard that they were doing the entire surgery over again, I began to panic.  I could remember the pain I went through the first time and just going through that again was not going to be at all pleasant.

I went into my surgery anxiety ridden. I was lucky enough to have the same man who did my surgery the first time with no complications be there to re-do this surgery.  I laid on the surgery table, crying, while they began to put heart monitors on me and set up the room.  One of the surgeons calmed me down by making me laugh, which I appreciated so much.  I wasn’t going to be fully under anesthesia but I was going to have enough pain medication to knock me out and the good thing about sleeping in the hospital is that even when you’re tired you cannot sleep because people have to always come and check your vitals or you’ll be woken up at 5 a.m. to have your blood taken out. I went under until about the end and slightly woke up.  I felt the pain of them inside my liver and them pushing down on my neck to get the tubes out and also continue the surgery.  I still was heavily medicated so I couldn’t move but I made sure to make as much noise as possible so they knew I was awake.  I remember that pain oh too well now and never do I want to go through it again.

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Post-Operation

 

The next couple of days were hard. I was throwing up everything I tried to eat and I was weak.  I didn’t want to get out of bed but with my condition, I have to due to blood clots in my legs.  I needed help walking around and also taking showers. (Thanks Mom) I was released the same day that I held any food down and was put on bed rest for a week.

 

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Falling asleep texting and waiting for my parents!

 

So now, here I am.

June 2017

On more medication then what I started with, having constant flare-ups and body aches, and just trying to get through the days without losing any spoons lol.

 

Thanks for reading.

N.Rarity

Invisible Illness

What is an Invisible Illness? An Invisible Illness is one that is not shown to the world. You cannot recognize that the person is sick or chronically ill but they are.  On Wikipedia, it describes Invisible disabilities as chronic illnesses that can significantly impair normal activities of daily life.  96% of people with chronic illnesses show no outward signs of it.  I am a part of the 96%.  I go through life struggling to even find the strength to wake up some mornings or to even get out of bed.  One day I can feel fine and the next, I could go into an entire flare-up.  A flare-up in my case is when all my symptoms come at once.  So my flare-ups consist of stomach pain, dizziness, migraines, sometimes vomiting, body aches, and feeling extremely weak.  There are days that I may have a flare up and I would still go about my day normally.  I push myself to extreme measures because some days I cannot just give up, some days I have to keep pushing myself to eventually make myself stronger in the long run.  I am a zebra, a spoonie, a rare-disease supporter and advocate. Now, you’re probably wondering what I just said.  Zebra stripes are used as the Rare-Disease ribbon, zebra is also a medical slang term for a rare or surprising diagnosis… hence me.  Now, a spoonie originates from a post written by Christine Miserandino found at the bottom.  This is when you measure your daily tasks by counting spoons.  Maybe sometimes you have a lot of “spoons” or you can come up short, leaving you with no “spoons.”  This is when you try not to mention your pain or discomfort.  If you have a lot of “spoons,” that just means you have energy to run your errands or go about your tasks.  I hear so often how I do not look sick, I look normal, how nothing is wrong with me… that is possibly the worst thing you can tell someone.  Even though I do not look, act, or portray that I am sick, I am.  My body hurts, my legs cramp up, my stomach is always in pain.  Do not try to downgrade my illness just because of my image.

This week was a very interesting one. The last time I visited my doctor was around February or March.  He ran some tests to find that I have lumps on my liver, from what, we have no idea.  So some liver tests keeps rising higher and I guess it may start to be a bother soon if it keeps going up.  Also, my liver collects acid and cannot get rid of it fast enough so I look like a dog with fleas, constantly scratching. So guess who has new medication to take! This girl! I already take two blood thinning pills and now I have to take this medication three times a day, which is going to be extremely hard for me to remember since while writing this I already forgot to take it on my lunch break. But unfortunately, I have to start taking them and actually remembering to.

That’s it for now, thanks for reading.

N.Rarity

 

*Picture is not mine, found on pinterest*

 

The Spoon Theory written by Christine Miserandino – https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

2014.

“There is no greater agony than bearing an untold story inside of you.”
– Maya Angelou, I Know Why the Caged Bird Sings

Let’s get back to the infamous rare disease in this post. After I was discharged from the hospital in 2011, I had to drop out of my sophomore semester of school even though I was only two weeks away from finishing. It killed me to drop my classes because I worked so hard and I knew I was succeeding but all that work ended up null and void. I had to postpone my summer job, which I loved, and was strictly told by my doctors that I needed to rest that summer. That’s another part that killed me; I had to give up a job I loved for a summer of rest. On top of all that, I could hardly hang out most of the time because I was still recovering to the point where I overdid it and almost ended up passing out in the Zoo because I stood up for too long. I felt useless, defeated, hopeless, and inadequate. I went into a deep depression that summer wondering why this happened to me out of all people. I went to doctor’s visits regularly, because since my blood is so thick, they have to check that my medication (blood thinners) is working correctly and that my blood is at a stable level. The test is somewhat along the lines of how you check for your sugar levels, you stick your finger with a needle, place the blood on a pad, and it reads how thick or how thin my blood is. I always have to be between 2 and 3 but recently just found out that stress can alter my blood levels, and if you know me, I’m always stressed out. I hated taking medication, I hated getting my blood checked, and I absolutely hated everything about this condition. So I was steady up until about 2012-2013. I always took my medication, did what I had to do, went on my regular doctors’ visits until I began to rebel. No one, absolutely no one, wants to take medication and after a while they started prescribing me other pills because my bones were so fragile from the blood thinners. Once they prescribed those to me, I gave up. I stopped going to appointments, I stopped taking my medicine, and I thought I was fine. Yes, I was reckless and until this day my parents want to murder me for stopping and sometimes I wish I didn’t, but I THOUGHT I was okay, I THOUGHT I didn’t need it, and I THOUGHT WRONG.
2011-December of 2014 I was alright, nothing went wrong and I was happy. I graduated college, I got to experience the Disney College Program, I had survived a lot and gone through even more and I thought I was healthy.
December 2014

jj
I went back into the hospital for a second time. Apparently the blood clots had started to close and I was sick once again. It was not as serious as the first time but this time, I wasn’t in pediatrics anymore. I remember people telling me I was not going to get same treatment as I did in pediatrics and they were right. The first night, I spent most of the time in the Emergency Room while I hustled my mother to get a wrist band and my sig. other since 2013 had known someone in the E.R. that they let him stay with me. When it comes to my condition, I don’t play games. My parents or someone has to be there with me because I am so mentally messed up when I’m sick that I will not comprehend what a doctor is telling me. My sig. other had put in his two week notice and he only had a few days left at his job but he had told his boss that I was in the hospital and his boss let him stay with me. My mother, father, and sig. other were with me the entire first night and never left my side. This is when the craziness occurred. They said my room was ready and they started bringing me upstairs, to put me in a hallway. Doctors would come and speak to me and I never felt more uneasy in my life because I was speaking about my personal business in a hallway. Now, as you see, I’m more vulnerable now then I was back then. My mother was furious and when she’s mad, you cannot get in her way mainly if it is something dealing with her daughter. I got into a room around maybe 8-9 am, I believe. Being in the hospital around this time was not so bad minus the horrible stomach pain and the fact I was on IV’s for about two weeks and then to add on top of that Christmas was a week later and I definitely did not finish Christmas shopping at all. I was scared most of that time though. I had already spent Easter in the hospital and I felt depressed, I couldn’t imagine spending Christmas in there while all my family gets to be together and if I was stuck in the hospital, I knew I was going to go back into depression if that was the case. I got released a week before Christmas and even though I was still getting back to being okay, and I mean okay in the ‘off IVs, no needles, and have to have strength’ kind of way. I promised myself I wouldn’t let this happen again, I wouldn’t have a scare ever again… but then I realized every 1.5 years; something has to put me back in a hospital. I guess it’s improper to think like that. But it’s true unfortunately.
N.Rarity